One for the carers.

This is a shout-out for all those folk who care for someone who is differently-abled in any way. It’s a shout-out to those folk who, day after day, bottle up everything they feel, all their frustrations, and hold close their shattered dreams and remain voiceless. For if you dare to open your mouth, someone might say either “why do you stay?” or “how can you be so mean to someone who is differently abled?”

I will address the “how can you be so mean?” aspect first. I’ve had it said – I’ve been called a domineering wife. When I’ve tried to voice what I feel at times on mixed forums, I get shouted down. “But you don’t understand how difficult it is for someone with Aspergers/someone who is deaf…” Maybe I catch glimpses of how difficult it is, maybe I don’t always understand. However, does anyone understand how difficult it is for other family members and care-givers? We shrink back and hide in the shadows – especially those of us who live on the edges where nothing is ever “bad enough” to warrant respite. Respite from what? It’s not that bad, really, is it? Is it?

It is unrelenting years we are talking about, here. It’s the shadow-side of decisions made in naïve youth, not necessarily regretted, note, but certainly made with no idea of what the price would be. It’s the weight of many, many years of non-comprehension, disbelief, tears and hurt until a label is applied that gives a measure of understanding. Sadly, labels don’t end the stresses and strains in holding on to a relationship with disability. They do, sometimes, provide something to scream at into your pillow.

So – I am going to be honest now. Sometimes I feel murderous. Sometimes I’m sick to death of repeating myself, trying to get messages across, trying to encourage changes in behaviour that would benefit not just one, but the entire family. It’s like screaming at a brick wall. Oh, there have been tiny changes over the years, but not enough to prevent fall-out. Am I mean and domineering? No more than the next wife or mother who tries desperately to prevent too much alcohol consumption, promote reasonable nutrition and encourage responsible sleep ratios. I am tired of carrying the load. I’m fed up with the criticism – why don’t I do things differently? How about: because I’m at work, not at home cooking. How about: because if I don’t give time to writing, wood carving, walking, burying myself in virtual worlds, reading, photography, I will lose my sanity – and that, more than anything, is precious in order for me to keep on being a care-giver to people with disability. I am trying to remain sane – more than sane – I am trying to thrive.

“Why don’t you leave?” – That’s the other question. Simply this: people who have disabilities are not to blame for their disabilities and do not deserve to be punished. While the going gets tough, there is still love, and the interconnectedness of family – bonds of blood, of journey, of story that run deep; tangled roots that cannot be torn apart without damage that could be permanent. I will not be party to such tearing apart.

So – my shout-out to all those carers – especially those who are in the no-mans-land of not horrendously severe disability, who always look at others and say, “Thank the gods my situation isn’t as bad as theirs…” to all of you, and to myself, I offer the forest.

It is now known that there are those trees that are the mother trees, whose roots communicate with the whole system and who assist in swapping nutrients and nurturing saplings. Those mother trees, the great, old ones, are also aware of and are influenced by the plants that are weaker, diseased or affected by plant that are parasites, or vines that smother. The mother trees don’t rush to the rescue every time. They remain firm and strong, doing what they can do. They don’t uproot themselves in a desperate bid to make everything perfect. They do what they can do, and they nourish themselves. They may look outwardly indifferent, but they are not. While their roots are entangled and part of the entire forest system, they remain themselves, strongly individual.

Caregivers, nurturers, take five minutes to close your eyes and feel the green growing-ness of the forest and feel yourselves thriving and trust that everything you need for your own inner strength is right at hand in whatever form you require it. Breathe in the sunlight, breathe in the air, taste the rain and be.